The family of a girl diagnosed with a debilitating disease have been left devastated by a block on plans to adapt the home they bought to meet their daughter’s needs.

Neil and Donna Scott bought a property in Darras Hall specifically to cater for the specialist needs of daughter Amelia, who suffers from rare Jacobsen Syndrome.

The family, who had been living in a three-bedroom semi detached house in Chapel Park, Newcastle, desperately needed a ground floor bedroom and bathroom specifically adapted for the six-year-old who has severe mobility issues.

After saving money and finding a suitable property in Darras Hall to convert, the family applied for permission to make the necessary changes to Northumberland County Council, which in turn was granted.

But the plans, which included converting a garage into a bedroom so the couple could be next to their daughter’s room, have now been blocked by the Darras Hall Estate Committee.

Neil 32, said: “We feel this is unfair. We’ve worked hard to save money to buy this property and convert it, specifically to help our daughter.

“The permission we needed was then granted by Northumberland Council and we thought everything would be fine.

“But the Darras Hall Committee have decided our plans for the bedroom conversion are too close to a boundary line by a very small amount.

“We know they have the ability to be discretionary so surely, if ever there was a time to show discretion, this would be it.”

Amelia Scott who suffers from rare Jacobsen syndrome

The family have now started an online campaign #helpameliashome which aims to gather support for their fight.

Neil, married to Donna, 30, said: “The whole point of getting this property was to allow us to have a bedroom on the ground floor next to Amelia who needs 24/7 care.”

Jacobsen syndrome is a genetic condition that affects one in every 100,000 children. However Amelia’s particular variation is only known in one other sufferer, a young boy in America.

Amelia has already undergone open heart surgery, bowel surgery, three knee reconstructions, three feet operations and two operations to her eyes during her short life. The youngster is extremely sensitive to light and is fed through her stomach.

Neil, also dad to Fay, 12, added: “Amelia can’t walk but is able to crawl. She wears splints all day every day, has scoliosis of the spine and needs growth hormone injections every day.

“Despite all of this, she loves life and always has a smile on her face.”

The family say they are now hoping that the Darras Hall Committee will reconsider their objections and allow them to make the changes they want to offer Amelia the best home possible.

The Committee were not available for comment.

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